Photography by Kristi Weaver
We hope this amazing 16 year old will be pleasantly surprised at the reveal of his new room-an awesome hang out fit for a hip teen and his friends! Charlie is quite charming, and handsome too.
Friends and family describe him as a sweet son, brother, Godson and pal. He is funny, loves board games and vacations, has killer dance moves and adores Ford Mustangs. What teen doesn't?
As he has grown older, taking vacations and dancing have become more challenging and dreams of driving a Mustang less plausible, as Charlie has Duchenne Muscular Dystrophy.
When Charlie hadn't hit some of the physical milestones expected as a toddler, his mother began to question things and after a series of tests, Charlie was diagnosed with Duchenne Muscular Dystrophy. This degenerative disease results in muscle loss and progressively leads to immobility. At the time of this devastating diagnosis, Charlie and his family were faced with a new reality that meant lots of physical therapy, delays in motor skill development and the realization that some skills would never be achieved-like crawling. Instead he had a "cute scoot.” Both then and now, he approaches the challenges of life with a positive attitude, although the limitations can be discouraging.
The simple things a lot of us take for granted have become major hurdles for Charlie. A quick trip to the grocery store with mom isn't in the cards for him anymore. A shower is quite the undertaking. Even using the restroom is a family affair due to the extensive support required to assist him as he is 100% wheelchair bound.
Regardless of the physical, emotional, and lifestyle changes they have endured, some things that have remained steadfast are the strength and love of Charlie and his family. Charlie's parents, Jennifer and Kurt, work tirelessly to give Charlie and his siblings everything they can. They have struggled financially over the years, but no matter what, they have kept their family's stability as their number one priority. They do it with a smile on their faces, always offering a shoulder to lean on for others around them even if they were in serious need of a shoulder themselves. Charlie's brother and sister, 12-year old twins Cooper and Jillian, love, help, and encourage Charlie in every way they can. They love to play outside together, play video games together, and leave a little room for pestering here and there because, after all, they are siblings! They also help Charlie with things like making lunch, getting dressed, and homework.
Charlie does not like putting people out and often becomes physically and emotionally distressed due to the difficulties of having to rely on others to complete activities of daily living such as showering, using the restroom, getting in and out of the bed, the house and the car. His goal is to be as independent as possible. However, he never complains.
Charlie keeps his chin up as goes after his aspirations full throttle. Just this past year, Charlie was on the Homecoming Court at his high school. He was in the cast of "Bye Bye, Birdie" and did a heck of a job as a reporter.
When kids come over to play, they often end up going upstairs to play in the kids rooms, but Charlie can no longer join. He is stuck with the boring adults downstairs. Due to his difficulty traveling upstairs, the family has utilized the den on the first floor as his bedroom. Our plan is to give him a private bedroom-giving him the privacy a young man desires as well as a place he can feel proud entertaining in! We will be removing all of the carpet on the first floor and replacing it with laminate flooring so his wheelchair can move easily throughout the first level, turning the dining room into a place to play with a fully equipped media room and building a wheelchair accessible bathroom!
When Charlie heard that he was chosen as the beneficiary of a SOARD make-over, he was beside himself with joy; bursting at the seams over the excitement! The spark of light that had been dimmed by his difficulties has returned as he anxiously awaits the May 31st reveal of his new room-a place where he can enjoy the company of family and friends while he shows them up with his dance moves!